Gary Kompothecras and Charlie Crist tag-team an effort to support autism quackery in Florida

It’s grant crunch time, which almost always means that a lot of stuff happens that I don’t have time to write about and that the week after I submit it (i.e., next week) usually nothing interesting happens to write about and I’m left posting LOL Cats or something like that. Be that as it may, sometimes something happens that goads me to the point where I have to comment, although reality keeps me from my usual logorrhea. Who knows, maybe that’s a good thing.

In any case, yesterday Brandon Thorp (who also works for the JREF) teamed up with Penn Bullock to write a disturbing report on just how much political influence some well known anti-vaccine activists and pseudoscientists wield in the state of Florida entitled Crist backer Gary Kompothecras bullies Florida health officials. It’s downright scary, as Kompothecras is a chiropractor with lots of money and very strong anti-vaccine beliefs who doesn’t hesitate to use his cash and connections to push a dangerous agenda that could endanger children:

“This madness has got to stop. No more double talk. This should be a fairly straightforward study. I feel that there are hidden agendas going on and I will not stand by [and] let it continue!! I will not wait any longer,” reads an email dated August 6 from Dr. Gary Kompothecras to Dr. Julia Gill, director of the Florida Department of Health’s (DOH) Division of Disease Control.

Coming from anyone else, the blustery email threat might be easily dismissed. But “Dr. Gary,” as Kompothecras is known, is the self-styled “Rainmaker,” a Sarasota chiropractor who has raised more than $1 million over the years for Senate candidate and soon-to-be ex-governor Charlie Crist.

So it’s bound to turn heads when the man known to occasionally lend his private jet to the governor uses his political clout to try to bully Florida health officials into turning over scores of the state’s sealed immunization records. Especially when they’re for a father-son team, Dr. Mark and David Geier, infamous for injecting autistic children with Lupron, a drug used to chemically castrate prostate cancer patients and pedophiles.

I’m sure that regular readers of this blog are well aware of who the Geiers are. I’ve been writing about them since 2006. Basically, they’re the father-son team of anti-vaccine “scientists,” with the father Mark Geier being an actual MD and the son not. Both believe that vaccines cause autism and, in particular, that mercury in vaccines causes autism; they thus fully believe that chelation therapy can treat or even “cure” autism. They’ve been making the rounds for years at conferences for the antivax underground promoting that idea as they continued to work out of Mark Geier’s basement in his well-appointed home in Silver Spring, MD. Together, around five or six years ago, they came up with the fanciful but dangerously vile idea that somehow testosterone binds mercury and keeps it from being chelated and removed. Their solution? Chemical castration with a drug normally used to treat premature puberty and patients with hormone-sensitive tumors like prostate cancer and breast cancer. Basically, Lupron is chemical castration. It shuts down the production of sex hormones, be they testosterone in males or estradiol in females. So, right off the bat Kompothecras is bullying Florida health officials in suport of quackery. And they might get their way:

A well-placed source within Florida government, who asked to remain anonymous, claims the governor’s office has been putting “political pressure” on the DOH to submit to the Geiers’ demands…Instead, senior DOH officials — “at-will” employees who can be fired without a stated cause — hope to stall the Geiers’ study until a new administration arrives in Tallahassee, the source says: “The issue is too politicized. No one wants to approve their study, but no one wants to be fired either.”

So Governor Crist apparently supports antivaccine pseudoscience as well. Either that, or he just doesn’t care about the health of the children of Florida and is thus willing to turn over sealed records to a couple of quacks to perform a bogus retrospective study because a big money supporter wants him to. Given the Geiers’ track record, such a study would undoubtedly be another JPANDS-worthy hunk of utter nonsense, but no doubt they could use it to sow fear and doubt about vaccines.

Worse, however, Kompothecras is trying to bully Florida health officials into doing is to violate HIPAA in the service of antivaccine quackery:

In 2004, shortly before they began experimenting with Lupron, the Geiers were conducting research at the Centers for Disease Control and Prevention (CDC) when on-staff technical monitors caught them manipulating data and performing analyses that put patients’ confidentiality at risk. The study was terminated.

Like their proposed Florida study, the research involved sifting through immunization records in the hopes of finding links between vaccines and autism. But unlike the CDC files, the data the Geiers seek for their Florida study contains patients’ addresses and social security numbers.

And:

This behavior is odd, almost singularly so, considering that access to Florida’s confidential medical records is a privilege, not a right, for any researcher. Those seeking access to such records generally approach the DOH as supplicants seeking a favor.

Which is as it should be, given privacy concerns. Turning these records over to the Geiers would be an atrocity against the patient right to privacy an a potential bonanza to lawyers. Remember, the Geiers were busted once before for trying to compromise patient privacy when examining records from the Vaccine Safety Database. When Kompothecras demands these records for his good buddies Mark and David Geier (who have opened a clinic in Florida, by the way, that subjects autistic children to their “Lupron protocol,” truly part of a nasty little franchise), Florida health officials should be doing everything they can to stop him. When kompothecras complains, “This project has been lingering for over a year. It seems from the actions taken by officials from the State of Florida that every single possible delay tactic has been employed to prevent the present study from going forward.”

Good! That’s exactly what Florida health officials should be doing. Here’s hoping they can run out the clock until Crist leaves office. Here’s also hoping that Thorp and Bullock’s article helps provide health officials with the cover they need to continue to resist Crist’s actions by shining the light of day on Crist’s willingness to sacrifice the health of Florida children in order to appease a prominent supporter. Turning up the heat on Crist in the blogosphere might help too. Pseudoscientists have no compunction about using politics to try to override science and get their way; unfortunately, that means supporters of science are forced to respond.

No, because the data is only for immunizations (or rather, the data would be useless to the Geiers). It wouldn’t identify individuals with autism; that’s why they need the personally identifiable information.

Can they require that the proposed research be submitted to and passed by a REAL IRB, one which is associated with a genuine research institute? Not the one that the Geiers run out of their basement, a real one run by real scientists.

And that the funding required to anonymize the data be provided up-front to the Health Department, sufficient to cover the number of records requested.

A covered entity may use or disclose protected health information for research, regardless of the source of funding of the research, provided that:
(i) Board approval of a waiver of authorization. The covered entity obtains documentation that an alteration to or waiver, in whole or in part, of the individual authorization required by Sec. 164.508 for use or disclosure of protected health information has been approved by either:
(A) An Institutional Review Board (IRB), established in accordance with 7 CFR lc.107, 10 CFR 745.107, 14 CFR 1230.107, 15 CFR 27.107, 16 CFR 1028.107, 21 CFR 56.107, 22 CFR 225.107, 24 CFR 60.107, 28 CFR 46.107, 32 CFR 219.107, 34 CFR 97.107, 38 CFR 16.107, 40 CFR 26.107, 45 CFR 46.107, 45 CFR 690.107, or 49 CFR 11.107; or
(B) A privacy board that:
(1) Has members with varying backgrounds and appropriate professional competency as necessary to review the effect of the research protocol on the individual’s privacy rights and related interests;
(2) Includes at least one member who is not affiliated with the covered entity, not affiliated with any entity conducting or sponsoring the research, and not related to any person who is affiliated with any of such entities; and
(3) Does not have any member participating in a review of any project in which the member has a conflict of interest.

Given the Geiers’ past IRB track record, I could see them playing fast and free with the regulations and producing an IRB “approved” waiver, despite the obvious conflicts of interest.

There are a couple of possible reasons why these folks might feel that they need raw (i.e. non-anonymised) vaccination data from the FL-DOH.

If all they want is data to show whether vaccines are associated with autism, they could do the same by recruiting – perhaps through a large HMO – autistic children and matched controls. However, since the “vaccines-cause-autism” movement is currently perseverating on their perceived need for a “vaccinated vs unvaccinated” study, one possibility is that they want a list of children who have had all of their vaccines and a list of children who have claimed religious or philosophical exemption from vaccination (i.e. the “no-vaccine” group).

With those two lists, they could – hypothetically – compare the prevalence of autism between the two groups. It’s not the most effective use of the data – as I’ve mentioned numerous times – but it would give valid results (which would almost certainly show no statistically significant association). I’m not sure that the DOH has a list of children whose parents claimed exemption, since that is most likely maintained by the schools, but that’s the only scientific reason for needing a non-anonymised list from the DOH.

A more ominous possibility is that they might simply be looking for a client list – perhaps with a mind to starting a second Autism Omnibus Proceeding in order to milk the VICP funds for more attorney fees and “expert witness” fees.

Or this could be a huge fishing expedition, with the Geiers looking for anything (autism, ADD/ADHD, MR, depression, scoliosis, acne, foot odor, etc.) associated with vaccination. We’ve already seen that they are indifferent to proper statistical analysis, so they would be sure to find something, which they could then wave in front of the cameras and say – for example – “Vaccines are associated with scoliosis and scoliosis is a disorder of part of the nervous system (i.e. the spine – a protective structure for the nervous system), so it is reasonable that they could also cause autism, another nervous system disorder.”

Well as a Floridian, I’ll just have to go vote Crist out of office. Now I have to decide between Rick Scott who’s Hospital Corporation was found guilty of committing medicare fraud and subsequently find $1.7 billion or Alex Sink who seems to have her own background in scandals. We’re not left with much to choose from this election cycle.

“The Sunshine State is a paradise of scandals teeming with drifters, deadbeats, and misfits drawn here by some dark primordial calling like demented trout. And you’d be surprised how many of them decide to run for public office.”

Oh I forgot Crist is running for Senate this year oops. Yea I’m pretty much feeling the same way. We don’t have much to chose from. I want to go the Brewster’s Million route and vote none of the above.

Luckily Chris, I’m not in your shoes. But my instant reaction to your entirely understandable comment is that, when all candidates are undesirable, it is even more important to vote on a “least worst” basis.

If your only choices are bad, worse and worst, you really have to grit your teeth, hold your nose and vote for bad.

I don’t think a study such as you mention would necessarily be valid, Prometheus. There may well be a difference in autism diagnosis rates between the two groups that has nothing to do with vaccination. Perhaps anti-vax folks aren’t as likely to seek an autism diagnosis in the first place. Unless the Griers actually brought in individuals from the two groups and had them evaluated by an independent expert who is unaware of their vaccination status — quite an expensive proposition (and still not entirely ruling out other confounding factors) — I don’t see how they possibly could produce valid results. Given their track record a proper study from them is extremely unlikely, and I agree with your suspicion that their purpose is something more nefarious.

We wouldn’t have had 8 years of Bush because of???
Evidence please.
Florida hung in the balance, the supreme court decided the outcome. Hanging chads, the active prevention of blocking voters ( texas sent info of possible felons who “may” have moved to florida, all black men btw, in FL convicted felons can’t vote). There was so much wrong with Florida, and when you look at where third party candidates did well, it never amounted to much.

When election choices look bad, I remind myself that it could be worse. I could be dealing with the election where bumper stickers that said “Vote for the crook. It’s important” were meant seriously.

Over in California, Equality California is running phone banks to support Jerry Brown, not because he’s marvelous, but because the choice of governor could determine whether the state appeals the Proposition 8 ruling.

“I don’t think a study such as you mention would necessarily be valid, Prometheus. There may well be a difference in autism diagnosis rates between the two groups that has nothing to do with vaccination.”

Too true, Idlemind. Even matching the two groups by age, sex and region wouldn’t completely control for “ideological” differences.

If we learned anything from the infamous GR telephony survey, it was that unvaccinated – or partially vaccinated – children may be at higher risk of having autism. This is probably because a number of parents stop vaccinating their children after having a child with autism. Since autism is heritable – at least partially – the younger siblings of autistic children, who are less likely to be vaccinated, will have a higher chance of being autistic.

I’ve mentioned this a number of times – any study that looks at “vaccinated vs unvaccinated” is probably going to find a higher proportion of autistic children in the “unvaccinated” group. This was borne out – I believe – in the recent Price et al study of thimerosal and autism, where they found a slight – but statistically significant – increase in autism prevalence with lower thimerosal exposure.

One possible explanation of the Price et al findings is that children with lower thimerosal exposure were from families with autism in either a sibling (which I think was controlled for) or a close relative. The reduced thimerosal exposure could then be a reflection of parents either refusing vaccination or insisting that a non-thimerosal-containing vaccine be used.

Just a thought. At any rate, the “vaccines-cause-autism” crowd probably doesn’t want to do a valid study of vaccines and autism because deep in their hearts they know that it would blow their hypothesis out of the water.

What they plan to do, I fear, is do a b******t study that produces the results they want and then use that as propaganda, as they have done in the past.

I spoke with a colleague of mine about the legality of what the Geiers and Kompothecras are doing. What I kinda suspected, and what my colleague confirmed, is that the Geiers, if they were granted access to the list, would be able to look at every little detail contained therein and do whatever “research” they wish to do (e.g., glean names from it to compare to other registries or databases).

What they could not do is contact any of those individuals.

So, the utility of the information in the list would likely be pretty limited and, barring some violations of HIPAA and other HHS regulations, result in useless drivel. However, knowing their past actions and general character, I would not put it past them to contact individuals and/or families on that list for the purposes of trolling for participants in a separate study, to recruit them to some manner of litigation or even to try to drum up some business for their clinic.

Todd, it doesn’t seem at all unreasonable to speculate that the Geiers might use the list to recruit potential patients whose insurance companies can then be billed endlessly for minimalist or nonexistent office visits (Dr. Geier has been known to bill patients for time he supposedly spends looking over their file after hours), and pointless tests and treatments, and to refer leads to their cronies in the VICP and personal injury business. One of Mark Geier’s functions as a VICP consultant is to evaluate legal clients’ medical records to determine whether they might have cause to pursue a claim, then to identify relevant experts or offer his own supporting testimony (testimony that is often disregarded these days due to his habit of opining in areas in which he has no expertise). This is what he was doing long before he started cranking out his faux-epidemiological studies, pounding the boards at autism conferences, dreaming up and patenting his “Lupron protocol,” and expanding his clinic franchise. Mini-Me supposedly does something similar to his father under the corporate name MedCon Inc. (established by Papa back when David was a teenager), though he hasn’t had much luck recently collecting payment from the Vaccine Court for his duplicative efforts. (See my latest blog post, A Complete Abandonment Of Principle, for a 2009 VICP decision in which the Special Master makes no bones about what he thinks of Mark Geier’s track record and David Geier’s qualifications, and disallows almost $90,000 in charges they billed to the court — including over $20,000 for trips to France and Italy in 2005 and 2006.)

Gary Kompothecras, too, is right in the thick of the ambulance chasing game. His heavily-advertised referral service, 1-800-ASK-GARY, points callers who believe they have been injured in an auto accident to a network of cooperative physicians (many associated with clinics he owns under the corporate title Physicians Group LLC), and to personal injury attorneys who won’t let any of that juicy no-fault insurance go to waste. There’s a lawsuit pending (See scottandfenderson.typepadDOTcom/law_blog/2010/09/dirty-details-about-800askgary-and-winters-yonker-exposed-in-kentucky-lawsuit.html) in which the plaintiff alleges that the 1-800-ASK-GARY solicitation scheme is unethical and deceptive. Where OSR#1 fits into Dr. Gary’s business plan is hard to tell, and is moot at this point, except as an indication that he has no compunction about consuming unapproved drugs disguised as “nutritional supplements” or selling them to his clients.

So, if the Geiers get to go fishing, do you think Dr. Kompothecras might get to go, too?

It just occurred to me that Kompothecras might be stepping up his campaign to shove the Geiers down the Florida DOH’s throat in the hope that he can get them started on their “study” before the election, while his pal is still Governor. One would imagine that afterwards, Dr. Gary won’t have half the clout — especially if his opponent in the Senate race continues to have a double-digit lead in the polls.

I’m a long time lurker here, and a Floridian. I am also a mother of two little kids and don’t want these guys having ANY access to my kids’ immunization records.

Does anybody know of any group that is looking to stop them, other than DOH employees? Because if there is one looking for a plaintiff to bring suit to nip this in the bud…..I’d be willing to sign up for that.

Apart from looking for a local activist group or campaign, why don’t you try writing to Carl Hiassen at the Miami Herald (see earlier discussion)? I’d love to see him do a column on the Geier’s Florida friends and their attempts to foster damaging quackery, or on the anti-vaccine crazies in general, or on their ambulance-chasing slimeball lawyers. I imagine a letter from a Floridian is likely to get more of a look than one from an out-of-stater.

Maybe contacting the DoH directly and stating your mind would help? Then the DoH could tell the governor’s office that they had at least one parent on their side. And if you could find any like minded parents and get them to also call the DoH…

@Matthew Cline: I called the DoH Immunization Bureau this morning, and was assured that they can’t get the records at all. He would literally need to get every single parent’s permission AND the ok of the child’s physician to get the records released.

I can kind of understand Dr Kompothecras’ desire to find out what caused his kids’ autism. My daughter has a congenital heart defect, like 1 out 100 kids born each year. I wish I knew what I could have done to prevent that, as do her cardiologists and surgeons, but I don’t have the right to go invade everyone else’s privacy to *maybe* find something in personal health records.

I’ll just add this to my list of reasons NOT to vote for Charlie Crist (like I was gonna do that anyway….)

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@Dr Aust: Good idea, I’ll drop him a line and see if he’s interested in writing a story, or has one in the works.